Open Data in the Era of the GDPR: Lessons from the Human Cell Atlas

Abstract

The Human Cell Atlas (HCA) is striving to build an open community that is inclusive of all researchers adhering to its principles and as open as possible with respect to data access and use. However, open data sharing can pose certain challenges. For instance, being a global initiative, the HCA must contend with a patchwork of local and regional privacy rules. A notable example is the implementation of the European Union General Data Protection Regulation (GDPR), which caused some concern in the biomedical and genomic data-sharing community. We examine how the HCA's large, international group of researchers is investing tremendous efforts into ensuring appropriate sharing of data. We describe the HCA's objectives and governance, how it defines open data sharing, and ethico-legal challenges encountered early in its development; in particular, we describe the challenges prompted by the GDPR. Finally, we broaden the discussion to address tools and strategies that can be used to address ethical data governance. Expected final online publication date for the Annual Review of Genomics and Human Genetics, Volume 24 is August 2023. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

A systematic review of non-coding RNA genes with differential expression profiles associated with autism spectrum disorders

“…The majority of journals and funders now have data sharing policies. National and international data protection laws restrict data sharing by genomic researchers but a number of initiatives have been developed to promote successful data sharing including those hosted by the European Molecular Biology Laboratory’s European Bioinformatics Institute [ 225 ], the International Cancer Genome Consortium’s project [ 226 ], the Pan-Cancer Analysis of Whole Genomes (PCAWG) [ 227 ] and the Human Cell Atlas [ 228 ]. The researchers involved in setting up PCAWG have called for an international code of conduct to overcome issues with data protection and provide guidelines for researchers [ 229 ].…”

Algorithms for a Commons Cell Atlas

“…While there is a general understanding of the significance of open data, e.g. improving transparency, accelerating research, and facilitating discovery of datasets (Vayena and Gasser 2016; Knoppers et al 2023), there is no precise definition of the term (Bahlai et al 2019). In the context of the CCA, we have been intentional about open data, specifically engineering the atlas to include open access to underlying data (both raw data and uniformly processed count matrices), key analyses, including lists of marker genes, and accompanying open source tools for exploring the data.…”

Chain of Thought Utilization in Large Language Models and Application in Nephrology

“…This is essential to guarantee the safety, reliability, efficacy, and privacy of the technology. Compliance with healthcare regulations and standards such as HIPAA in the United States, GDPR (General Data Protection Regulation) in the European Union, and other similar regulations worldwide is a critical consideration when integrating LLMs like GPT into nephrology and other medical fields [50,51]. These regulations mandate strict confidentiality and security of patient health information.…”